You will receive news of EUROMAC’s work and reports of any studies and trials undertaken by partner institutes based on information from the registry.
WHAT IS THE BENEFIT FOR PATIENTS?
You will be contributing to the shared knowledge about McArdle Disease and the other included conditions. You may in the future be selected for invitation to join studies or trials on an international basis.
If you wish you can receive a newsletter about EUROMAC’s work and reports of any studies and trials undertaken by partner institutes based on information from the registry. If you choose to opt-in you will receive details of any other information that EUROMAC agrees to disseminate on behalf of partners or patient groups. For example, news of events or publications.
HOW SECURE WILL MY DATA BE?
EUROMAC registry is held separately from this publicly accessible web site and is not be accessible by the public, search engines, etc. The registry complies with the confidentiality policies of the European Union and with national directives and regulations on ethical aspects of patients’ data processing. You can check out adopted regulations in the section dedicated to links of interest.
The partner institutes of EUROMAC have a private intranet through which they are able to access the registry. This is a secure network with all passing data being encrypted and anonimized. If partners wish to download data from the registry, they are only be able to download anonymised data – i.e. none of the data is identifiable to an individual McArdle person other than by your own neuromuscular consultant, who, by logging in, will have access to your data for care purposes.
WILL I BE ABLE TO ACCESS DATA FROM THE REGISTRY?
WHAT WILL I NEED TO DO?
You will need to supply your personal details and your doctor will need to supply your medical details. This has to include confirmation of the DNA analysis. (In the case of McArdle Disease this is of the PYGM gene that is responsible for the condition.) If this is not already on file you will need to arrange with your neuromuscular consultant to have this testing completed. Your consultant may also want to ask you some questions to help complete the EUROMAC required data.
IS THERE ANY COST TO ME?
There is no charge from EUROMAC for your entry into the registry or for holding your data. We anticipate that there will be no cost to the patient for their consultant’s work in submitting the necessary supporting information. However, circumstances may vary in each country. Please confirm with your consultant.
HOW DO I APPLY TO BE IN THE REGISTRY?
LINKS OF INTEREST
University Hospital Vall D’Hebron
Institute of Biomedical Research of Vigo, University Hospital of Vigo
Servicio Galego de Saúde
Universidad Europea de Madrid
Insttituto de Salud Carlos III
University Hospital 12 de Octubre
Sanidad Madrid – SERMAS
Istituto di Ricovero e Cura a Carattere Scientifico Eugenio MedeaAssociazione “La Nostra Famiglia”
Istituto Giannina Gaslini, University of Genova
University of Messina
Assistance Publique Hôpitaux de Paris
Nice University Hospital
Hôpitaux de Marseille
University College London Medical Research Council
Association for Glycogen Storage Disease
Univeristy of Thessaly
Rigshospitalet, University of Copenhagen
University Clinic Bergsmannsheil
Istanbul University
agsd.org.uk/
care-for-rare.org
Facebook: Glycogen storage disease type V
